Kaitlyn Hughes | features editor

More than a year of treatment.

Ringing of the bell.

A year of normalcy.

Relapse.

This is what the past three-and-a-half years of Kylie McMullen’s life looked like.

Kylie, 9, has Stage 4 alveolar rhabdomyosarcoma, a rare soft tissue cancer that develops in different muscles throughout the body. It was just after her sixth birthday when her parents, Kirsten McMullen and Sean McMullen, noticed she was limping around while she walked and wheezing in her sleep. Shortly after, she was diagnosed.

The first year of Kylie’s diagnosis consisted of intense chemotherapy and spending at least 100 inpatient days in the hospital.

“It’s physically draining on Kylie,” Sean said.

After 18 months of treatment, in November 2023 Kylie rang a bell, a tradition to celebrate the end of treatment. She was able to return to school, doing well in her classes and connecting with friends.

“She was living like a normal kid,” Sean said.

Then, on Jan. 6, Kylie’s cancer relapsed.

Kylie deals with the physical struggles of her illness, while also experiencing the emotional burden that comes with it.

“The mental toll of relapse has been really hard on Kylie,” Sean said.

Kylie is currently receiving chemotherapy based on a VIT protocol, taking a combination of medicine: vincristine, irinotecan and temozolomide. The family will travel to UPMC Children’s Hospital of Pittsburgh for vincristine to be administered by IV on Day One of a 21-day cycle. On days one through five, irinotecan and temozolomide are administered at home through liquid or a pill. Then, Kylie has 16 days off of the chemotherapy so her body has a chance to recover.

Kylie is currently in the second cycle, taking the medicine administered at home. She has been able to sleep through the night and eat, although she has a low appetite. Her parents are glad she is getting rest because there are times where she is waking up due to side effects such as nausea and pain in her hands and feet.

Through the challenges, the family of five finds ways to cope.

“We are just going to take it one day at a time,” Sean said.

On Kylie’s bad days they provide comfort for her and when she has a good day they try and elevate it as much as possible.

Sean, a high school math teacher, has flexibility at work to be there for his family so they can make hard decisions as a team. If their other children need something, he always makes the effort to spend time with them.

When Kylie was first diagnosed, her pediatrician realized she had a collapsed lung. Sean drove her two hours to Pittsburgh where she then spent 21 days in the hospital.

He said he was glad he took her to be seen in Pittsburgh because the oncology team is “top notch,” always doing their best to answer any questions and navigate the challenges that arise with Kylie’s treatment.

When at the hospital, the Child Life team ensures Kylie is comfortable, always offering to do crafts or play games with her.

“Kylie handles the trips to the hospital really well for everything she has to go through,” Kirsten said.

But each day is different for Kylie.

“Some days I feel good, and some days I feel bad,” Kylie said.

There are ways Kylie is able to cope with these struggles. She enjoys FaceTiming her friends and playing Roblox with them, even if it is only for three to four minutes. Having someone to listen to her and provide care and compassion really helps her, Kirsten said.

Throughout Kylie’s journey the family has received continuous support.

“The community has been stepping in and helping us in every way you can imagine,” Sean said.

The help from others has taken many forms.

One of Sean’s coworkers prepared breakfast, lunch and dinner for the family. There have been multiple spaghetti dinners, basket raffles held and bracelets made with the words “Kylie Strong” printed across them. Some people have started GoFundMes, which have helped pay for travel, since the family lives about two hours outside of Pittsburgh.

In high school, Duquesne student Sydney Winnings played on a varsity basketball team that Sean coached.

“Sydney’s been like Kylie’s big sister forever,” Sean said.

Kylie would always make an effort to sit with Winnings at basketball games and dinners for the team.

One time after Sean stopped coaching, Kylie wanted to go to one of Winnings’ games and wear a matching jersey. The family got a t-shirt and ironed on a Winnings’ name and number.

Since Kylie has been diagnosed, Winnings has made a point to come out and visit the family. She also shared a t-shirt fundraiser with the College Republicans and Sigma Kappa on campus, so a bigger group of people can help raise awareness.

Winnings was devastated when she first heard Kylie was diagnosed with cancer. It made it hard for her knowing that Kylie was “the sweetest little girl.” When Kylie rang the bell, it was a huge relief for Winnings.

But a year later, Winnings saw on Facebook that Kylie had relapsed.

“I was just at a loss for words,” Winnings said.

Sean said it was humbling that someone like Sydney who is a busy college student still takes the time out of her day to think about their family.

The care from people like Winnings helps Kylie throughout the trials and tribulations of her recovery.

“She loves knowing that there is support around all the time,” Kirsten said.

To donate visit: https://www.gofundme.com/f/wy695c-kylies-fight